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Data is critical

Sarah Lindsell and Professor Ashkan discuss the difference BRIAN will make to researchers and healthcare professionals in helping to diagnose, treat and manage brain tumours

Sarah Lindsell, CEO of The Brain Tumour Charity, and Professor Ashkan, Professor of Neurosurgery at King’s, discuss the difference BRIAN will make to researchers and healthcare professionals in helping to diagnose, treat and manage brain tumours more effectively – and data is key! You can watch or read the interview below.

[Video transcript]

Sarah: I’m delighted to welcome Professor Ashkan, Professor of Neurosurgery at King’s.

He is a great friend to The Charity, guides and advises us, and reminds us when we don’t have things quite right. So, we’re very grateful to you for giving up your time today, no doubt in between clinics and surgeries.

Sarah: What would you say have been, from a clinical perspective, some of the biggest challenges when it comes to research?

Prof Ashkan: The biggest challenge in the field of brain tumours is the fact that these tumours are very heterogeneous. So, no two tumours are identical, no two gliomas are identical. Even if the surgery report says glioblastoma, that’s not the same in two different patients.

Therefore, for us to be able to understand and appreciate the full spectrum of the heterogeneity of these tumours and to be able to think about novel treatments and management pathways, we need big data, we need data from everyone. Ideally, every single patient with a brain tumour needs to provide their data and we need to have access to this. The breadth of the data – it’s very important to capture as much information as possible from those suffering from these tumours.

But it’s not just about the breadth of data, it’s also the depth and the quality. We’ve not been very good at collecting some of that important data, especially from patients. For example, quality-of-life data and patient-reported outcome measures. So, it is important for us to be able to have access to not only the breadth of data, but depth as well.

The Brain Tumour Charity did a study a couple of years ago and about 97% of patients are really willing to provide their data. They recognise, for research, for us to be able to find new treatments and novel therapies, it’s crucial for us to have access to that data. So, I think data, big data, good breadth and depth of data is really critical and not having that has somewhat been hindering our research and progress.

Sarah: So, I guess that’s exactly why you’ve been advising us on the development of BRIAN and one of the things you’ve done as an advisor is made sure that every single development within this technology meets your needs as a researcher, as well as those who are living and dying of the disease.

Tell us a bit about how you see BRIAN addressing some of those challenges?

Prof Ashkan: Essentially, BRIAN links up with a whole spectrum of different registries and databases. For example: The Cancer Registry, databases from Public Health England, from various hospitals themselves – it brings all of that data together.

It also brings in data from patients directly, those affected are able to put in information about their treatment, about unconventional, non-standard treatments they might be taking – who knows what other treatments out there patients are potentially using that we’re not aware of.

So, all this information is put in one place, which makes life for researchers, such as myself, easier, because instead of having to go through and search lots of different databases, we can go to one place, one point of call for all those queries. And not only get information from other registries, but all that important quality-of-life, patient-reported outcome information and measures. This really helps speed things up.

Those patient-reported outcome measures, that patients enter themselves in BRIAN, can be accessed in real time. Often it takes a long time for the data from patients to get on to those various data registries, but imagine if that data was immediately available to researchers as soon as the patient places it on there.

Quite a lot of patients are also actually quite keen to learn about clinical trials – we know that brain tumour patient participation in clinical trials is much less than other tumour cases. The national average is about 7%. For brain tumour patients that drops to about 2 or 3%. And again, BRIAN can act as a source of information about what is available in terms of clinical trials. I know there are other databases that patients can search, but they are often quite difficult to understand. Whereas BRIAN brings together all that information in a way that patients can actually understand, and will hopefully help increase patients entering into trials, because at the end of the day, for us to come up with new treatments, novel treatments, we need trials.

Sarah: So, that all sounds great in theory, but actually using a new piece of technology, like BRIAN, is somewhat demanding on a clinician when you already have a million other things to do. But actually you’re already putting this into reality and you’ve been doing it in the middle of a pandemic.

Tell us how you can see BRIAN helping you in your clinic, with the patients you treat today.

Prof Ashkan: I think BRIAN will be a very useful tool and we are already starting to use it at King’s in a variety of ways. For example, as I mentioned, what really matters to the patients is quality of life and that’s one of those data sources we have not been very good at capturing.

BRIAN has quite a few cool features that I think will really help us. One of those features is the ability for patients to put in data, on a daily basis, about how they are feeling. By looking at that data, we can assess which interventions are benefiting our patients, which make them feel better and improve their quality of life and which ones don’t. It can also help us review the timings of these interventions, to try to optimise a patient benefiting from them.

Another cool feature of BRIAN are the Community Chat rooms, which are particularly useful in this COVID era. Where we are not having so many face-to-face interactions with our patients, this allows us to be able to liaise with patients in the absence of regular face-to-face clinics, to get a better idea of how they are doing and to try and advise them better in terms of their treatments.

Thirdly, the challenges, which allow patients to really practice mental and physical tasks. In a way, that forms another way for us to see how someone is doing – are they improving? Staying stable? Both from a physical and cognitive point of view and again, another means of trying to assess the situation and improve it.

BRIAN actually sees and pushes the right information through to patients. It looks at their tumour, needs, and provides them with the information relevant to them. So, it really acts as an excellent source of information that can collaborate and work alongside the advice that we are providing to them as clinicians.

And probably, last but not least, are all those other matters that us, as doctors and clinicians, are not so good at addressing. For example, what benefits are available to people with a brain tumour? Again, as a source of information it’s very valuable for patients to be able to access this.

I think it complements what we do as clinicians and hopefully makes the whole patient journey much better, and the information we are trying to provide and optimise much better.

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